The Never Normal

For weeks I’ve been going through my mother’s drawers and closets and cabinets, sorting items out to donate and piling it in her living room. Eventually there was so much stuff that it looked like a small thrift store. I dealt with it in stages. As much as I didn’t want to keep the things, I couldn’t bring myself to get rid of them either, for a while. It stayed like a small thrift store for a two months or so until I boxed and bagged everything up – and it stayed like that for a week until I finally carted most of it, one car load at a time, down to Grassroots Givers in Albany. The rest I gave to someone who came to the house with a trailer. The last of it is gone now, and there is a big empty place in the room. I don’t know what to do with that space but I’ll figure something out.

Where two identical display cases stood for more than 40 years, there are flattened imprints in the green carpet. Sometimes I stand there, one foot on each, just to occupy space where no human has stood in decades. The house feels lonesome and strange. I don’t really miss my mother – our relationship was too acrimonious for that – but I do miss having a mother. I want my mommy…but I want some version of her I never had in the first place. I don’t know if that makes any sense. This isn’t at all what I expected, but then again I can say that about so much of my life.

Jonah still has no adult program plan, and I don’t want to talk about that. The early morning fear is still there, but I don’t want to talk about that either. I distract myself doing things with friends, with crafts, with cleaning, with word games and puzzles, with tv shows and movies and books I’ve already watched and read many, many times until they are comfortable, familiar things.

There are always the people who recommend books, tv shows, and movies about autism. If I had a nickel for every time someone did this, I’d have about a buck fifty. I almost never want to read, watch, listen to, or encounter anything out in the world about autism, as I’ve had more than enough of it for 3 lifetimes. The latest book recommendation came via email from a well-meaning new-ish friend who doesn’t know a whole lot about Jonah. The recommendation was for a book about a non-verbal kid with severe autism. I glanced at the synopsis and as per usual, it’s an inspirational tale of an underestimated child whose intelligence was unlocked once they found an appropriate means for him to communicate. 

While I do understand that the person who sent this to me probably did not intend to be instructive or insulting, I can’t help but take it as a “maybe you too can unleash the overlooked intellectual potential in your child” message. 

I hate these kinds of books, honestly. To me, they imply that educators and parents of kids like Jonah might have teased a kind of brilliance out of these children if only we had provided the correct tools. The message, also, seems to be that there are no significantly developmentally/intellectually disabled individuals – only those waiting for someone to come along who cares enough to help them communicate effectively.

The other takeaway seems to be that the value of a human is in one’s intellect. After all, the triumph of these stories is always the discovery of greater intelligence than previously perceived. 

Whatever the case, I say Boo is worth just as much as me or you, just as he is.

This past Sunday I drove down to visit him. The sun was shining for the first time in a few weeks, and it was a mild day. So warm, in fact, that after our lunch and our walk, Jonah wanted to swing. I held my phone up, playing the familiar mix of music he always likes, and he smiled and swung for quite some time before asking “more walk?” And so we walked some more, holding hands as usual. He even smiled for a selfie. 

I miss him almost as soon as I drive away. 

I have locked away so much of my emotion where Jonah is concerned. It is a defense mechanism. I do not often allow myself to wonder what he would be doing if he were any other almost-22-year-old young man…but sometimes I do. 

Of course I like to believe he would be a happy youngster, maybe in a romantic relationship with someone special. I like to think we would be close, he and I. I don’t imagine specifics; they are too difficult to conjure. 

Mostly I just enjoy him for who he is and try not to despair when he has aggressive behaviors or medical problems. For now, this is enough. 

The groundhog did not see his shadow, so they say, which somehow means we’ll have an early spring. This I can get behind. 

May it be warm soon, with sun shining on us all!